Need help on new drug and a story about Tysabri and Lymphoma
Posted: Wed Feb 24, 2010 11:43 am
Diagnosed with MS in 2006 after an attack that left me not walking, I was put on steriods for a week and got back up but not without the help of a cane. I started Avonex in early 2007, but after having mini flare ups after each shot and then starting to not walk well again with a cane went on Tysabri in June of 2007.
Tysabri worked great, every month when I was due for the infusion I would start to loose my ability to walk and after treatment and with my cane, I was living life...However, after 18 treatments, I was diagnosed with Hodgkins Disease - Lymphoma and went through Cancer treatment and radiation for most of the year in 2009 and have been in remission ( I see my onocologist next week, so hopefully, I am still good).
Question/Help - I had been doing excellent since the cancer drugs, even walking better and sometimes with out the cane and then...the attack came about a month ago - pretty big and bad - lost mobility and eyes started going so back on steriods I went and now my doctor wants me to go back on a "drug" - like Avonex, Copaxone, etc.... and I don't know what to do. I could just try and wait it out and see if I can live on steriod infusions, but know that the delay may cause damage that can not be fixed ( I still have some eye issues since the most recent attack)
Any recommendations? Anyone else diagnosed withh Lymphoma while on Tysabri?
Also, as an FYI - the Tysari/Biogen people never followed up on my case with the FDA...I still have their paperwork that was given to me by my doctor that needed my approval. I called them to discuss what they needed and they never followed up...guess they didn't want to know...
Tysabri worked great, every month when I was due for the infusion I would start to loose my ability to walk and after treatment and with my cane, I was living life...However, after 18 treatments, I was diagnosed with Hodgkins Disease - Lymphoma and went through Cancer treatment and radiation for most of the year in 2009 and have been in remission ( I see my onocologist next week, so hopefully, I am still good).
Question/Help - I had been doing excellent since the cancer drugs, even walking better and sometimes with out the cane and then...the attack came about a month ago - pretty big and bad - lost mobility and eyes started going so back on steriods I went and now my doctor wants me to go back on a "drug" - like Avonex, Copaxone, etc.... and I don't know what to do. I could just try and wait it out and see if I can live on steriod infusions, but know that the delay may cause damage that can not be fixed ( I still have some eye issues since the most recent attack)
Any recommendations? Anyone else diagnosed withh Lymphoma while on Tysabri?
Also, as an FYI - the Tysari/Biogen people never followed up on my case with the FDA...I still have their paperwork that was given to me by my doctor that needed my approval. I called them to discuss what they needed and they never followed up...guess they didn't want to know...